My Husband, My Life, My Love, My Family, My Cancer
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Hi all, we (bff and I) had a great time at the music fest and met the singer of one of my favorite bands, it was awesome. 15,000 steps that day, whew, I’m happy to rest up now. Sunday was lunch and margaritas at the beach will a school friend (elem through HS). Great vacation!
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So, I have a question for the group…. this is not about Social Security Disability, but my previous employer's long-term disability. I have been receiving LTD since 2019. Periodically they call or have my MO fill out a form and easy peasy I continue the benefits. This time (I am at my 5-year mark) they keep asking for more info from my MO and PCP. Because my latest scans are showing NED, though my MO's notes state I am "stable on current treatment", the LTD company may deny my claim saying I am no longer "disabled".
Have any of you heard this before !?
My MO's nurse says I am still Stage 4 and under treatment, and she has not had a problem before with the insurance companies denying a Stage 4 patient.
Any advice I can use in my appeal?
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Candy, The company that my former employer used to manage LTD claims tried to say that I could go back to full-time work after one year. I fought it with my medical records. My arguments were also that the cancer treatments caused a great deal of fatigue which would make full-time work impossible. I have never been declared NEAD, just stable. My scans always show quite a bit of cancer throughout my body. After that, I was careful to never say I was feeling good at medical appointments. After that one time I was never challenged again but I did have to answer all the annual questionnaires and provide my medical records. I am grateful that I am no longer on disability. Now I am considered fully retired. It's a relief not to have that sword hanging over my head. Last year for a time I had two part-time jobs which often added up to a 40+ hour week. Those weeks were truly exhausting and I felt less guilty b/c it would be hard for me to work full-time.
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Hmm, @candy-678, the LTD company is likely leaning on language in the notes about you being NED, from what I can understand on why LTD denials happen based on a video that I've provided below. It is odd though given you are Stage IV. The video that discusses this seems aimed at early stage, not Stage IV (or doesn't discuss the specifics of this is happens to Stage IV patients). It is rather odd for them to be questioning your LTD, given that even when you are NED, obviously you are in active treatment for the rest of your life. Your MO might need to be put more thought into the wording of the notes in your medical record.
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Chicagoan- I truly do not know how you can handle even part-time work. The other day I was working on something here around the house- a scrap piece of paper and figuring numbers. My mind felt so, what do I say, cluttered. I could not get the numbers straight and got different amounts each time I calculated them. I had to set the work aside and come back to it later to finish it. And sometimes I feel like my thoughts are just out of reach. Like I cannot grasp things like I used to. I don't know how I would handle work- deadlines and having to not make mistakes on things. Plus, I could not, no way, do the job I had before retiring. No way. 12-hour shifts, lifting, multi-tasking, and dealing with stressful situations. So even if I went back to the workforce it would have to be a different job, not the job I left.
Mods- I will watch the video you posted. I too do not understand why they are giving me grief- being Stage 4. Yes I am stable for now, but my MO said the MEDS are keeping me stable, and I am on active cancer treatment. And ANY scan can show progression. Do I go back to the workforce just to stop again in August if those scans show progression, or November with the next scan if August's scans are stable still? I would have to reevaluate my employment every 3 months based on the scans.
Anyone else with ideas/comments?
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Candy, I would repeatedly emphasize your symptoms/side effects from treatment. I think it's good that your MO is writing 'stable on current treatment', which clearly implies that you are stable because of the treatment. Hopefully they won't deny your ongoing claim, but if they do, I can't imagine you not winning an appeal. It's Stage 4, for crying out loud.
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Candy, I second SF-Cakes' advice, regarding ongoing symptoms and SEs of fatigue, nausea, GI distress, and include the lack of focus/clarity. You might ask your nurse/ doctor to include them in their notes. Just because you don't talk about them at every appointment doesn't mean they're gone.
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I have my LTD renewal coming up as well. I fill out my paperwork and my doctor just signs what it says. Only I know how I really feel. They read it over of course. But the damage from this treatment has occurred to our bodies that we will never heal from. My medications are very sedating and I emphasize that highly. My cancer is in the base of my spine so I am limited with my mobility for duration of time. The wording is everything. I would recommend not even using the words stable or ned. I just always put, progression can occur at any time. I also highly emphasize my neuropathy. And balance issues. It’s an immediate risk. Speak to your doctor at length about this. It has to be handled with kit gloves. I’ll be thinking of you. Hugs Candy!
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Thanks to all of you. You understand it.
I do think I downplay my side effects. No, I do not talk about them at every appointment. Fatigue, GI issues, lack of thinking clarity at times. That is my norm now. But, thinking about working an 8-hour day, even if it is a desk job, sounds daunting. Monday - Friday, 8 hours each day. I could never keep up that pace.
Yes, the cancer is quiet now, but we all know that can change at any scan. Progression. Change in treatment. New side effects.
But…
Then I wonder. Could I work?! Am I being a wuss? Milking my Stage 4 diagnosis. Should I work until there is a change?
I wonder about others on here that are stable on the standard meds— CDK 4/6's, Piqray, Lynparza, Xeloda, etc- the oral meds, not an infusion that you have to go to the office for. Do those people on here still work? Of course, if a person is getting an infusion, has a Port, bald, sick, you know, the "normal" picture of a cancer patient they would not be expected to work. But us that are taking meds in the comfort of our homes and doing stable cancer-wise, should we keep working???
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I struggled with that question, "should I keep working?" for three years before I resigned this April. And at the beginning of my MBC diagnosis I was also taking care of my ill husband and working full time, it was bananas. But over time, the primary side effect that I experience is fatigue/exhaustion, and having to get up early to get ready, commute into the office, spend all day there, drive home... I would collapse when I got home and could not do anything else. At all. The reality of having abnormally low WBC, RBC, platelets, neutrophils, etc for years translates into exhaustion. These meds are harsh, even if they look like cute little pills.
I realized I had to let go of my career (I'm 54 now), and that was very hard to accept. All those thoughts of "should" kept going through my head, "I should be able to do this". I had to stop should-ing myself.
Since leaving my work, my stress has gone down significantly. If I have a night of lousy sleep, that's okay, I can lay down again in the afternoon. If I have a day of feeling overwhelmed with grief, I can cry and take care of myself without worrying about letting other people down by calling in sick. I know some folks continue to work and more power to them. I know my lifespan is significantly shortened by this diagnosis, and if I can have a quiet time of grace before the shit hits the fan, I'll take it.
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sf-cakes- Your post resonated with me. That is me, to a tee.
My PRIMARY side effect is the fatigue. My cluttered thoughts and trouble concentrating are worse when I am tired. I nap, even for 30-45 minutes each afternoon, just to recharge the batteries. And I am at my best in the mornings. By evening I am worthless. I pace myself thru the day. Even with the housework. I cannot see myself getting up for work, commuting to work, working, and getting home with homelife still waiting for me. I would collapse.
I too am 54 (will be at my birthday this Fall). Can you see yourself going back to the workforce? What if your disability plan said you need to? How would you feel?
And your last paragraph- I have a lot of bad sleepless nights too. And your comment about letting other people down by calling in sick to work, Yes that is how I feel too. I would not be reliable as an employee like I am now.
Thank you for putting my thoughts into words.
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@candy-678 and @sf-cakes I feel so bad for you young ladies. I was still working when I was first dxd eight years ago and had to retire early from my dream job, but at least I was already 63. I went on disability for two years and then retired but I couldn't imagine still working even though half of my job was spent at a desk. My MO had no problem documenting my disability. I agree that correct wording is essential. I remember part of the documentation for disability had to do with the ability to stand for long periods of time, lifting, etc. all of which is impossible for Stage IV whether you are NED or not.
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Candy,
I did not work at all from for 1 1/2 years. I couldn't have b/c I was so sick and exhausted, and also caring for my mother until she died in January of 2018. Later in 2018 I started to get invitations to preach again. I left my job as a pastor after being diagnosed b/c there was no way I could effectively do that work. But preaching on occasion was fulfilling for me. Most of the work is done at home and then I am just at a church for a few hours on Sunday mornings. Over the years I started feeling better and better, so in 2023 I began praying to God about finding a job. God answered those prayers with two jobs! I had another offer for a 30 hour/week job that I knew would be more so I declined that. Last year I began my fun part-time job with the Cubs. It is physically strenuous because I often stand for 5-7 hours. On the first day, I didn't think I could do it because my feet and back hurt so much. But I found that I quickly got stronger. I work with many disabled people at the Cubs. I am inspired by coworkers who travel to work on public transit in a wheelchair or stand for several hours with crutches, or have dealt with Downs syndrome, Cerebral palsy or muscular dystrophy their entire lives. I find working to be fulfilling because I like being part of a team and having the stimulus to grow in new ways. I personally find it depressing to sit at home by myself all the time. So for me, it has been well worth it to go back to work part-time. By the time I started in 2023, I felt I wasn't jeopardizing my disability status since I was fully retired by then from my former employer and close to full retirement age with SSA. If my cancer treatments change, I may have to quit but I am glad for this time. I continue to preach many Sundays. I like being "forced" to reflect on faith and scripture and how it applies to our lives. While last year I did a 7 month contract at a church as well as working for the Cubs, I learned that that was too much for me. I got through it but was very tired and didn't have much time to enjoy my retirement activities, like bike riding and pickleball.
Where I live, there are many jobs now that people can do mainly at home, such as customer service, appointment setting, etc. From what I understand, training is often required to be done on site, then people can work at home either full-time or part-time.
My own experience has been that I need to "use it or lose it" both physically and mentally. As Sondra noted a while back, our bodies can quickly become "deconditioned." I exercise regularly to maintain my mobility and strength b/c I've seen how quickly I lose it when I don't. Mentally, I find I need to challenge myself, whether it is through volunteer commitments (like some of the committees/boards you are on) or through jobs. It's easy to get rusty mentally.
This is my 2 cents. For me, working part-time has been good but there have been times when I simply could not work at all, it was enough to get through the day taking care of myself.
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@candy-678 everyone has made valid points, and I agree with them all. I feel like it absolutely is an individual decision, but there is no way you should feel guilty for collecting what is yours. The whole reason that we are automatically qualified for this is because we don’t know if we will make it to Social Security age someday to collect what we have earned over the years working.
I understand how you feel there are days when I feel well enough to work also and then there’s days when I don’t. Not having the stress in your life regarding work is huge! At the moment I am on Xeloda and if all goes well, my infusion will be ending of Keytruda in July. Even though the chemo is in pill form, you are still on chemo. Obviously, that still comes with many side effects. So I refuse to feel guilty being on disability at 56 years old after I worked hard my whole life from the age of 16. I wasn’t ready to leave the workforce as I’m sure you weren’t either. I worked through stage one to stage 3 over 4 years and now it is time to focus on myself.
Candy you are worth it and you deserve every penny!❤️1 -
I too am 54, there is no way I could work. Just no way. The cancer has settled in my spine and I cannot sit or stand for too long. Fatigue is a bear. To not mention the neuropathy and unbalanced feeling I have. I’ve been on disability for years and years. I didn’t go to a deli and order up a sandwich of cancer with a side of chemo…. It happened to me and it wasn’t my choice , so I too don’t feel bad at All. I’d rather be home alone and able to have my day go as my body needs. I am very thankful that I am able to rest when I needed. Cancer is a tough fight and the chemo is Brutal. Iv of course the worst but orally and those little pills pack a punch.
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Sending love out to threetree and emac, you are both in my thoughts.
Mae, love those photos! You are super stylish in your fabulous sunglasses.
Candy, I would consider going back to work if my doctor told me I didn't need treatment anymore. Which would obviously be a miracle and isn't likely to happen! I am open to the idea of a few hours of volunteering per week, but I'm just settling into being unemployed, so will give that some more time and thought.
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Candy, I worked for a year of cancer and treatment but once my brain was involved and had to have steroids all the time, then brain surgery and the whole brain radiation, work was a no go. My brain could not comprehend reading, TV or anything required for the job I had. The most I could do workwise is some sort of chat job anyway but I don't honestly wish to work anymore anyway but that is my choice.
I had Herceptin and my MO says everything is still good. Was told to get a cream as my head has cradle cap, I will buy shampoo and a baby brush and also trimmed bio hair as well, allows any cream or moisturizer down further on skin. Should clear up quickly. Done some vacuuming, need to break down boxes for recycle this week, need laundry and other chores done, boosting my budget with the TV and getting paid for ads.
Thinking of making quinoa this morning and adding different things to it. I am thinking of 1/2 cup of quinoa cooked up, that should make enough to have with more than one meal, lentils and possible chia seeds, I will have to see what else is needed.
The day after Herceptin is generally my most fatigued day but I am going to get everything done including the possible walk if DB and I go shopping, we will see about that.Everything I do will be in short bursts with rest in between chores, most efficient and quick way to get stuff done. I do hope everyone has a good day and in pockets for those needing it.
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Well, I talked to my LTD carrier, my PCP nurse, and my MO nurse.
The LTD company stated that their beef is that my scans are good, thus I am not "disabled" anymore. Their definition of disabled is you are unable to perform duties of ANY gainful occupation within 50 miles from your home within your skill set. Their doctor is reviewing the case. They are getting my medical records and statements from my doctors. If the 2 disagree, them and my docs, then they get an outside doctor to break the tie.
So then I talked to my PCP and MO nurses. I explained about the side effects- GI issues, fatigue, low white counts, thus immunocompromised status. I explained about the "chemo brain" that I have- trouble with mental clarity. I explained that I do better in the mornings, less productive in the afternoon and evenings. That I do my housework in spurts, with rest in-between. And I stressed with the MO nurse that we all know that progression can come with any scan. The what-if I went back in the workforce and 6 months, 9 months from now I have progression. I would have to reapply for disability status then. The doctors are going to send letters to the LTD company stating these things.
Chicagoan- I admire you being able to manage such a full schedule. I cannot. Maybe I am a wuss when someone with Downs, or cerebral palsy, or muscular dystrophy can do those things. I DO have severe osteoarthritis affecting my hands, shoulders, spine, hip, and knee. I cannot stand for long periods or sit for long periods. And I use a cane. And where I live there are not a lot of jobs from home. Even our in-person jobs in my town are mostly restaurants and retail stores. I live in a small town. As far as "deconditioning", I do not exercise due to the multiple aches and pains. But I do exercise mentally. I read. I watch Jeopardy to see how many answers I can get. And I volunteer with my town's library. I volunteer with my church and am back to in-person church services (I was out of church during the Pandemic). And I enjoy being in my home with my cat.
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Candy~ stress highly that you cannot sit or stand for long periods of time. Never mention volunteering or anything that would involve seeming to feel good. My doctor puts terminal cancer in writing with possibly progression at any time and is in severe pain and discomfort due to prior chemotherapeutic therapy. Neuropathy in both feet and hands. You really need to spell it out. Especially if they are even thinking about not giving your ltd. I would hit the wall. I have Percocet, fentanyl patches and I am heavily medicated and I list my medicines. If they cause the big D I emphasize that clearly. Don’t hold anything painful or problematic to seem stronger to yourself or anyone . They look for reasons to deny. Makes me so mad. If I was starting my life over and knowing what I know now, I would go and advocate for stage four people. It just isn’t discussed enough. Be persistent and don’t give up!
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@candy-678 - StagIV Cancer is just too overwhelming physically, mentally and psychologically, no one who suffers from it should have to feel guilty or have to explain LTD. I’ve felt guilty about not feeling well enough to even volunteer at the gallery I am a member of, and. Feel like I’m missing out but then I realize, I know I just can’t commit to any day or small event, and. Not being strong enough to paint some days. Yes, it sucks.
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Candy,
I love Jeopardy! too. I keep taking the test year after year b/c I would love to go on the show, even if I embarrassed myself! That current champion, Adrian, is fantastic!
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jeopardy every night here too!!! Love the questions! I’ve noticed my recall isn’t as sharp as it used to be. It bugs me. But I learn alot. It also depends if I remember the category and how the question is presented. Great show though. Watched tournament of champions as well , and celebrity jeopardy as well!
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@candy-678 - I totally forgot about your arthritis and hip and the fact that you can't get anyone to do surgery for you. Those things count, even if it's not something your MO can address. You should be able to get something from your PCM or orthopedic. Ugg. What a pain to have to justify yourself! And what jerks for putting you in that position!
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@candy-678 When I went on LTD and SSDI, I had to fight as SS rejected me twice. I hired an attorney and won my case. LTD gave me an awful time, so I hired an attorney and won that case, too. Careful about the attorneys though. One wanted 1/3 of my future earnings. What got me the proper verdict, was I no longer considered myself safe to drive when on meds. Certain meds taken for pain, make it illegal to drive, or operate machinery at work. I did not trust my judgment to drive. My disability claim was based on MS. Frankly I did stop driving and that was 20 plus years ago. You don't want to have a Private Investigator catch you doing something that you marked on your paper you could not do. And keep your renewal forms short, don't add things. Just fill the boxes in, as I understand computers read this (ie: diagnosis) . When you add more, humans must read it and are prone to pull the file quicker. (From my SSDI attorney).
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Thanks guys. And good advice.
Shanagirl- That is something I struggle with, committing to doing something. One doesn't know how they will feel the day of the event. Diarrhea issue, one of those days where the fatigue hits hard, etc. That is something that would concern me about holding down a job. A job has "sick days" and rules. You cannot call in for every whipstitch. My old job you had to call in 2 hours before your shift, and only had 5 sick days a year before being called into the supervisor, and 7 days before getting fired.
Jeapordy- My recall is slow too, Mel. I go "hum, hum", and when they answer I say "yeah". I cannot come up with the answer in time. Chicagoan- the current champion is good. I liked Sam Buttrey. And Matt Amodio (he looks like my nephew, lol).
SeeQ- My disability is based on the cancer. The arthritis really blew up over the past 5 years, post cancer diagnosis. I guess I can use the arthritis during appeal, ??, but I am concentrating on the cancer now since the disability was based on that.
Irishlove- I cannot afford an attorney. And I am not on any meds where I cannot drive.
Thanks to you all. I also wanted to post my experience to warn others that even with Stage 4 we are not always guaranteed disability. Esp. if we are stable on our current treatment.
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Candy-Matt Amodio is one of my favorites too. He seems like such a sweet guy. I do like James b/c he is from my hometown. I respect that Matt has a very challenging job while many of the other Masters are seem to be professional jeopardy players and can spend most their time studying trivia. Not the most useful way to use their extraordinary intelligence in my opinion.
I was wondering about your challenge. It sounds like it is coming from your employer-provided LTD, and not SSA? Once I was on SSDI, my employer LTD was a pittance but of course every little bit helps. I hope that with all the good advice you have received from Irishlove, Micmel and others, that you will prevail. I think the employees need to justify their jobs and make us go through hoops every once in a while.
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Candy, in your pocket as you are dealing with LTD, it should not be so hard to deal with. I was on welfare first when it came to being off for early cancer tests and surgery and then when I was found to have the brain met, a social worker at the hospital guided me with the forms my doctors needed to fill out and it was fairly easy to get. I am sorry it is not so clear and easy for you.
As far as working, my temper would not allow me to work in public, best could possibly be a chat job but I do enjoy my freedom. Shopping last night let me run into an old friend from when I worked at Home Depot at Walmart, we stood and talked a long time and I got a couple of hugs from her. I got more meat pies, great value pasta dishes and chips to grind up and add to a seasoning. There was a zesty tortilla chip which I ate while watching TV, it was super spicy. If I want a tortilla chip, will stick with Doritos zesty cheese.
I am waiting for some Amazon to arrive, getting baby shampoo for my head to get rid of the dry parts, already have a gentle face scrubber that will work, also order some Aquaphor moisturizer as well and will use vaseline at night. Skin feeling better already, just have to keep on top of it post shampoo.
Lastly, my breakfast will be one of the pasta dishes with an egg, lentils and some beefless ground to start, beefless ground will feature later as well. I hope everyone has a good day, in pockets for those who need it, in my own for the budget boosting and quick bouts of housework. I have started on getting quick bits done every day to have more energy and time to play mobile games for money boosting as well. If I keep doing a little housework, I can maintain a less dusty household. Just got to get to the bed making now.
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I’m just waiting for my nap! I spoke to an oncology dietitian this morning. We’ve come to the conclusion the medications are causing weight gain for me. I’m going to try to keep a food journal to share with her in three weeks. Just to make sure. She also said I need to eat a few times a day and that might be causing it also. Even if I’m not hungry. It’s always something.
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Chicagoan- No it is not Social Security Disability. It is my previous employers Long Term Disability from that company. It is a small amount each month, but as you said, every bit of money helps. And I worry that if denied, could that in some way affect SSD? Would it look bad to be labeled not disabled anymore. Maybe Social Security goes by a different set of rules and the 2 are totally separate and wouldn't affect each other.
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Welp, my hair is gone! I had it shaved yesterday and oh man what a relief. Honestly, it had to go, there was maybe 50% left and not in a good way, it was pretty much a paramilitary undercut look at that point with the sides bald and a little cap of hair on top. What was I going to do with that?! Mentally I feel so so much better and its a weight off my shoulders - feel much cleaner and in control. And my new beanies come today!
Im debating whether or not to spend quite a bit of money to get some fake hair in place for the next year - Id like to go back to work in the fall in some way and I dont want to be wearing hats/scarves as Im not out about my diagnosis. Also, visiting family who dont know either is going to be a challenge as I have a nosy aunt although my uncle with alopecia would be delighted to have a bald twins photo taken as a laugh. Perhaps for this first round of hairloss it will make sense, something to think about over the weekend as I practice with scarves and see if that is something I want to deal with day to day.
We went for lunch yesterday after my hair system + shave appointments and it was so nice to do something normal together for the first time in forever. The sushi place was delicious, too bad the train broke down one stop from home which kinda ruined the day. I guess I got more steps in and actual stairs, but with low Hgb and feeling exhausted from walking and dealing with the lymphadema leg, it was not fun to have to get off that train and find an Uber to go a whole mile. There may have been crying and cursing Sadiq Khan and Transport for London but its not like anyone stares at you in this town - could have been in my own bubble for all anyone cared lol.
I love Jeopardy! also, alas we cannot get it on tv here. About 9 months after I was diagnosed I had a dream where Alex Trebek visited me and was holding my hand, sitting on the side of the bed. I asked him - 'does it hurt, dying?' and he said not really, smiled, and promised to come back when it was my time to go. Im holding him to that promise, damnit!
Hope everyone manages a nice weekend, we may actually have some sun and summer here. And its the big Euro football championships, so something to watch at least while I have Lymphadema Leg elevated. Yesterday wiped me out good!
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